Sweet Dreams, Frightening Moments

First things first. I hope I did not accidentally misrepresent myself in the last blog entry; Kristin and I are absolutely thrilled that people all over the country (and even world!) are thinking good thoughts for us and praying for us. As I said yesterday, it is both humbling and appreciated.

Second things second. Someone asked if the 50/50 odds were in reference to survival or intubation. Emphatically referring to intubation! Hope my sleepy grammar didn't cause too much confusion. Also hope my students don't bash me for unclear pronoun references.

Now onto the day's events...

Kristin continues to be amazing with little Sam. Her favorite activity is to let him hold her fingertip while she supplies binky entertainment. Those are the moments when he seems most alert. Good moments.


Nothing particularly important going on here, but I think he looks like a burrito. Mmm...burrito. Dinner at Chipotle tonight compliments of the Drowns, their generous (and anonymous) friends, and my friends and colleagues at CTHS. Thanks for the gift card(s)!


As promised, a better picture of Sam in his new lion hat. He didn't wear it long for reasons that will become clear later, but I wanted to show it anyway. Also, it's getting harder and harder to catch him with his eyes open. As of this precise moment, Monday's surgery is 32 hours and 21 minutes away. Kristin and I both agreed that when we first came here, we were most worried about the surgery itself; now, because of Sam's scary complications, we think it can't get here soon enough. Again, details below...


This was my favorite and worst moment of the day. Favorite for obvious reasons. Worst because of the second picture. Evidently, Wolfie is both literate and not without a sense of humor. He must have read yesterday's Shakespeare-inspired post, because today he lived in a world of high drama. The observant may notice that Samuel is beginning to get a bit jaundiced. We are hoping it is not a result of infection, but the possibility lurks. Also, seconds after this picture was taken, Sam had the first of today's numerous apneic episodes. He became almost completely inert and unresponsive; his heart rate dropped below 40 bpm; his respiratory rate dropped to less than 10 breaths per minute. Seconds later he was revived with an oxygen mask, but as I suggested, this was not the last of his episodes. They continued and even worsened throughout the day...


Which brings us to luggage. Yes, luggage. Those of you who know me will not be shocked, but evidently, in the face of powerlessness and uncertainty, I try to control something. Today's great accomplishment? I reorganized the clothes in our suitcases. Felt good.


Then I solved a Rubik's Cube. Felt even better.


In spite of my moments in time-well-spent-land, however, Wolfie continued to worsen throughout the morning and early afternoon. He was having episodes 10+ times per hour with one requiring significant intervention to get him breathing again. It became so bad that the attending physician herself appeared and gave him a stern talking to. She even used his middle name, Jerry, so you know he was in big trou-ble...


As a result of Samuel's worsening attacks, the doctors decided that it was time Wolfie got a new hat. What is it, you ask? A rhino? A unicorn? Triceratops? Personally I'm thinking white ninja. Then again, it might just be the CPAP mask, the final intervention before the dreaded uncertainty of intubation. The Catch-22? Most of Sam's other data looks pretty good, but allowing the apnea to continue at this frequency and severity is becoming...unsafe. Intubation would virtually guarantee that the apnea would stop; however, the critical and delicate balance of his other issues (specifically his oxygen saturation levels) would likely be interrupted. Hopefully the CPAP will do the trick. We'll know one way or another tomorrow.